Tag Archives: emotions

I was asked to write the below this week. Done, I am now attacking my work space, an intimidating task as I hoard EVERYTHING just in case it could be used in a future project. I want clean. I want work surfaces. But my evil twin brings home every tossed aside item I come across. This cleaning of the art space is a soulful negotiation between my two selves.

beloved clutter

So rather than write a new blog post, I share what I just wrote for something else, hoping it just might serve a purpose here.

Spilling out on to the floor!

warmly, marcy

Chemo: How I Faced It, Tips I Might Share – A Personal Perspective

A photo documents me beaming out as the very first chemo drip started. My long hair, a source of life long pride, was having a good hair day. A table was laden with healthy foods and drink. I look strong and hopeful. The truth is moments later I asked everyone to leave, turned off the lights and I lay there crying the slow, quiet tears of defeat that seemed to befit a younger stage IV ovarian cancer patient.

My six frontline chemotherapies were pretty standard. No real crises outside of the ongoing saga to find a willing vein. Oh, to have had the starting wisdom of a port! Eventually I got “plugged in”, infused and left, counting off one more chemo treatment until they were done, as was all my bodily hair, and I walked out to build a life in remission.

I approached frontline chemo as an endurance test. I rigorously took notes and followed them attentively. I started a “blackout period” free of all supplements and green tea the day prior to each infusion that lasted for the two days after infusion. A support team coordinated having food available and people to look in the days I would feel the sickliest. The days, in fact, when the last thing I wanted were visitors. They were assigned to bring a book and leave me be, that is if I didn’t head them off before arrival with assurances of just how fine I was. Compared to the horror stories of imagined chemo, I had more good days then bad albeit always weary in a newfound way. I walked every day. I ate well. I enrolled in a local clinic for immune deficient people that offered weekly treatments of acupuncture, shiatsu (Chinese massage), and access to a cancer-trained naturopath who assigned supplements that my Western team of medical experts then approved me to take. East met West courtesy of my body.

I was recovering from surgeries to my chest and abdomen and the news that I had one of the worst cancer diagnosis imaginable. Shock, grief and a raw primal fear I had never before experienced were daily components of my initial reality. The routines of chemo survival helped me by being concrete.

My husband and I moved in with friends in the city when it was obvious I faced a huge medical phase. This decision allowed us to under-function initially as friends took over being the competent leads. They told us what to do when. This allowed us space for walking through our emotions. Living with friends infused such a sober period with joy, love and laughter. I don’t know how we would have handled this same crisis at our beloved home in the woods but I suspect the increased isolation would not have served us well.

Four years later, I am a chemo pro. My port is a dear friend and I have different tactics for the different chemo regimes offered up. My life is good; I look healthy and bike or walk everywhere. I feel strong and hopeful most of the time. I have pride in a new head of hair even if shorter.

“No, No. Don’t make me go!” pretty much summed up how I felt as I lined up my gear for departure. I was stuck. I had promised to attend, a slot was held and my gentle husband expressed rare firmness as he guided me to the door. The rental car arrived and I was on my way in a snappy red car. My mood improved within minutes and I knew the decision to take this solo quest across four states, 700 miles and a vast, low population region to gather with other ovarian cancer sisters from across the country was more than sound.

Camp Mak-A-Dream was my destination. Originally designed for children with cancer, it now adds in sessions for women with ovarian or other (non-breast) cancers – an under-served population. I have enough friends that are camp zealots to apply eventually for one of the free slots (It’s all free!) even though I was reluctant to attend “camp.” Would it be one more humiliation in my new norm – life in cancer world? But the new norm is all about letting go of ego; few of us make it through frontline treatments without losing control of every possible bodily function. Hairless and facing death, you are challenged to let go of all presumptions about what makes you important.

Nonetheless, choosing camp over an annual gathering of my organizing colleagues seemed a harsh statement. But I went to regain my groove.

Diagnosed in April 2010. Recurred in October of 2011. Still in my first recurrence two years and seven months later, it seems that I am now taking a rebuilding break from treatment to test my body. Rather than just staring into the endless abyss of treatment towards death, I am committed to re-entering the world of living. I wanted the daring of a twelve-hour drive alone through such a massive landscape to remind myself of freedom from treatment. Where better to re-prioritize my life then with a group of sisters who need no back-story.

I arrived a day late to a room full of women partying hard and yet quick to abandon their fun to greet me. I settled into my assigned cabin, found the Art Barn

Marcy’s Camp Craft

and, once oriented, bedded down to ready for a full weekend of activities. Time to climb the climbing wall, ride horses, zip line, attend a sex discussion for women living with hacked into bodies, screen the most excellent movie N.E.D (No Evidence of Disease – the rock band of GYN-Oncologists committed to giving solace to those living with disease and educating on symptoms.) And more….

The landscape is lovely. The camp is built around a subtly steep butte that we are all challenged to climb and we do, at paces that befit our bodies’ status, but no one avoided the challenge. Impressive indeed.

The staff and volunteers create a culture of cheer. It is a cheer that pervades the camp but never crowds out the awareness of mortality each women carries, the 18 deaths of campers in the past year are honored, the women in current crisis or hospice are talked about and tears of sadness blend in well as we exchange treatment realities and hopes. It is a setting of Livingly Dying.

I will close with what I loved most – the women supporting each other with mirth and attentiveness as we took on the challenge of rebuilding confidence in life. The zip line requires that you step off from the tree house ledge into open air. That step is huge. Some women froze as the minutes ticked on. From below we would cheer, reminding the temporarily stuck person that this was nothing compared to what we have already lived through – we cheered for however long it took. And then we each jumped into the abyss of life.

Have you been swept up in the recent brouhahas debating how dying people should close out their lives – loudly versus quietly? Two doomed women have triggered voluble discussion in their separate determinations to live longer. They share being younger and skilled in amplifying their voice. Being loud has been a part of their strategy. They enjoyed full lives before and during their years with terminal cancer. One has since died, the other struggles mightily in a hospital.

The discussion has not been amongst the dying but rather largely amongst those still living lives of good health. Frankly, columnists needing to find a topic launched much of this with plain poor manners.

Andrea Sloan, typical of many advanced ovarian cancer patients, had no more FDA approved drugs to contain her cancer when her doctor indicated she was a molecular match for a new drug still in clinical trail. She couldn’t access the clinical trial so she organized a team, Andi’s Army, to petition the drug company via public outcry to grant ‘compassionate use’ of the drug. It was denied and she died within four months of her campaign start.

Lisa Sloan campaigning for access to drugs

Lisa Adams suggests no policy changes I know of, she just tweets and blogs her experiences as a lab rat for her cancer, saying yes to whatever seems plausible to keep her alive longer with her young family. She has quite a following indicating appeal.

Lisa (left) in the hospital with her doc

I am also rather loud in my living with cancer just as I was rather loud in my pre-cancer life. Whether astrologically flawed as an Aries or for some other reason, I share my reality and am persistent in my medical options. It is not wrong or right.

I watch another cancer sister move into the end zone with her disease. She is as contained as ever. She suffers quite a bit and understands there is no turning around where her cancer is heading. She is actively dying despite still being in treatment. Why, I wonder, have none of my local sisters chosen Death with Dignity, legal in Oregon. But I wonder to better inform my own choices not in judgment. When in my own dying process, let alone how, will I finally let go? Physical pain can be more tolerable than saying that final goodbye, I suspect. I think the terminally ill have few judgments about how to die, we are busy enough keeping our heads above water. Watch us or not but don’t judge.

There is a story about the Buddha being approached for counsel on the best way to handle news of one’s own approaching death. Buddha, apparently, began to flail around in deep, loud, uncomfortable hysteria for several long minutes. Observers had no idea what was happening. Just as suddenly Buddha sat back up, done with the outburst, and said, “There is no right way to die.”

I awoke this morning to an hour of Martin Luther King, Jr’s voice. His speeches are always humbling and inspiring. The hour closed with his final speech before being assassinated. In it he referred to being stabbed in the chest and the knife missing his aorta by the merest of slivers. Doctor’s noted, and the press repeated, that if he had sneezed prior to surgery the knife would have shifted enough to kill him. A little girl wrote in his favorite letter, “I am glad you didn’t sneeze.” May we all avoid a fatal sneeze today and feel gratitude for the choices we are allowed.

Here’s a secret. I’m a bit of a wreck. It hit the other night as my partner lay sleeping. I explored my lower right abdomen wondering if I could trace my dull discomfort deep within to cancer I could actually feel. I stayed up a lot that night. The next day, with light, I continued the exploration. If there is cancer growing within, my fingers are not the ones to detect it. A small relief.

I am in the countdown to testing. It’s been awhile since I have faced freak-out tests. While scans and blood results always come with anxiety, this round, scheduled for next week, returns me to the sensations of 2012 when my body and mind crumbled as each testing cycle that year revealed more bad news.

I know I should ‘make a plan then work it’ but what would that plan be. It probably wouldn’t be me walking the streets of Philly for two days of treatment combined with testing then getting the test results – alone. But then I try to imagine the elegant plan, being attended to by my many loved ones buffering the blows, and I don’t see the corroding pit deep in my stomach unclenching. I am alone – this adapting to my revised expiration date is an inherently solo and lonely process. At least for me. This solitary journey towards the update is not the problem. The problem is the news I fear getting. There is no safety net large enough to cushion the blow of my cancer doing an end run around this immunology trial.

Better to plan around the concrete stomach churning and shallowness of breath as anxiety locks down my systems. Better to dig out the tools taught me for calm, so I complete the simple meditation exercises that assist my body and mind in melding to the moment – never quite as bad a moment when approached with such attentiveness. Better to hunker down with the coping and resurface when I know my new reality.

But I leave you with this memory.

Amid getting my diagnosis on the side of a highway, as my ER doctor shared the test results that showed I had advanced cancer of still unknown origin, there was magic. My daily life is not filled with magic so I have learned to enjoy it when it does show up.

I had pulled the car over when my cell phone rang that rainy April late afternoon in 2010. It was a point on the road right below a dear friend’s home. It’s a quiet stretch of road so the call coming just then was fortuitous. As I sat in the car hearing the messages that chilled my blood for their tone, I prepped for making the call back. Just then the phone in my hand rang anew. Another dear friend had spotted my car on the side of the highway and called asking, “What’s up?” I explained, “I am having an emotional breakdown.” She said, “Want company?” I said yes. Within 30 seconds she was pulling open the passenger door and slipping in. I told her I was pretty sure I was about to get devastating news. I made the call, heard the doctor’s words, repeated them back so that Cara would know the verdict and said goodbye to the doctor.

I have wondered since then what others do when given the news that their life as they constructed it is done.

Cara and I held hands. I think I wept, silently. I said, “Let’s see if Kelley is home and call in the team.” Of course Cara knew exactly what to do as did the at-home Kelley. In fact, both my husband and yet another dear friend were already frantically en route, the doctor having given them the news prior to me. Within minutes we were gathering in Kelley’s living room, which she was setting up like a cozy bistro with foods flowing and plentiful seating. I went upstairs to call my family and collapse in loud pain. When I came back down the living room was filled with a circle of love, people prepared to walk wherever I needed that night and the longer term as we all committed to my new path. My strongest memory is maintaining deep eye contact with each individual as I relentlessly asked them to pledge to stay by my side, to help me delay death. And they have. It doesn’t mean that some sections of this road I still travel alone.

Thank you for keeping me in your thoughts this next week.

Much love, marcy

p.s. I feel much better just having written down my reality as my dog sleeps at my feet. Life is good.

In the world of cancer there is a constant effort to declare each cancer the worst (or occasionally, the best). All cancer is a life changing proposition. Perhaps no diagnosis bodes the double whammy of dire odds and dire judgement as does Lung Cancer. Of course, you somehow brought on the horror. The first question lung cancer folks field is, “Did you smoke?” If only we can pin the blame on them.

Anyone daring to live in a catastrophically polluted city in China in 2013 is similarly at full blame for whatever happens next. Right?

Below one young husband shares what he has learned since his fit and compelling wife, my friend Kim, got delivered a stage iv lung cancer diagnosis at age 34. Sometimes being alive in this world is enough to give you lung cancer. They also are both big fans of Consano, https://www.consano.org/about/how-it-works, a way to crowd fund medical research.

An Intimate Awareness of Lung Cancer

Author: Spencer Williams
Nov 14, 2013

My grandfather, his fingers yellowed by tobacco from smoking unfiltered Pall Mall cigarettes for more than 50 years, died from a combination of prostate cancer, emphysema, and alcoholism. He didn’t have lung cancer, but if you pay attention to all of the anti-smoking ads, then you’d think he should have or at least only people like him – old folks who smoked a lot of cigarettes for a lot of years.

I believed the ads. I believed that smokers got lung cancer. I held that belief up until the day my wife was diagnosed with lung cancer. Kim was diagnosed in May 2011. She was 34 and until a few months earlier had been very active and healthy. She ran regularly and ate well. We rock climbed, kayaked, camped, and rode our bikes to the bar in good weather. She wasn’t a smoker. She told me she had a cigarette at her bachelorette party in 2007 and smoked the occasional cigarette at parties in college. All of that was years before and all of her doctors now classify her as a non-smoker.

So how did Kim end up with lung cancer? Was it her little bit of smoking in college or maybe it was exposure to radon. I don’t know. She doesn’t know. The doctors don’t know and ultimately, once Kim was diagnosed with lung cancer, the how started to matter much less.

Most people, like my wife, don’t discover they have lung cancer until they are overly symptomatic and other illnesses have been ruled out. By the time Kim had had a cough for a month with difficulty breathing, then lost her voice, and then started coughing up blood, almost 6 weeks had passed. A tumor the size of golf ball had collapsed the upper lobe of her left lung.

At 34 years old, without obvious risks factors, other causes got ruled out first: allergies, asthma, bronchitis, pneumonia, tuberculosis all came back negative until she started coughing up blood. Coughing up blood is bad. We were scared. Coughing up blood is what happens in movies just before someone dies. That was two and a half years ago. After it was determined that Kim’s cancer was non-small cell lung cancer, adenocarcinoma, a treatment plan was determined and begun.

As kids under the age of 40, our limited experience was with younger breast cancer “survivors” who endured their treatment, were in remission or NED (no evidence of disease), and living their lives. Kim was strong and just as young as those women, and if she could endure her prescribed 8-weeks of chest radiation with concurrent chemotherapy, then she and I would get back to living our lives.

According to the post-treatment scans, the chemo and radiation appeared to work in their targeted areas. Unfortunately, the lungs are the “main bus terminal” for the body and her lung cancer decided to metastasize and took a ride down to her right adrenal gland. Kim has been in treatment ever since and we became really aware of lung cancer.

We are aware that lung cancer is so deadly due to the fact that there aren’t any easy tests for detection – no self-exams, no PSA screenings. What we discovered is that lung cancer doesn’t just happen to old, long-time, multiple packs per day smokers. We learned it happened to us and was going to continue to happen to us. We learned lung cancer kills almost 160,000 Americans a year. We found out lung cancer kills more people per year than breast, prostate and colon cancers combined. It kills almost twice as many women as breast cancer and three times as many men as prostate cancer.

And then we learned about genetic testing and targeted therapies. We were told Kim’s cancer had a specific mutation called an ALK rearrangement and a targeted therapy had been fast-tracked for approval by the FDA, Crizotinib, and Kim would be the first patient on it at her treatment center.

I was the internet researcher for information about adenocarcinoma in those first six months so Kim wouldn’t have to read the discouraging statistics about lung cancer. Facts like the 5-year survival rate for lung cancer is 16%. That rate hasn’t really improved in the last 40 years. I also found out only 4-5% of lung cancer patients have the ALK rearrangement that Kim has.

I looked into why a drug like Crizotinib would get fast-tracked by the FDA. I was astonished at what I learned. Most traditional chemotherapies are considered successful if 10-20% of patients respond positively to them. In clinical trial, Crizotinib, had a 65% positive response rate in patients for an average of 10 months without the heavy side-effects of traditional chemo. Kim just passed two years on Crizotinib on October 4.

Knowing a “cure” is unlikely for Kim’s cancer, her goal is to always be at least two-steps behind the medicine. And there are now second-line therapies to Crizotinib in trial. The research in this area of treatment shows great promise along with targeted immunotherapies that are also in trial.

Kim and I have an intimate awareness of lung cancer. Now we need lung cancer awareness to reach an audience larger than patients, their caregivers, their friends and their families. We need people to understand that if you breathe, you’re at risk for lung cancer. We also need to change the stigma of lung cancer being a smoker’s cancer. Almost 18% of new lung cancer cases will be never smokers and 61% will be former smokers. So please, if you ever meet a lung cancer patient, don’t have your first question to them be, “Were you a smoker?” Instead ask them how you can help.

If you’d like to learn more about Kim’s ongoing journey, she blogs her experiences at aquariusvscancer.com.

I was recently asked to pen this summary for an In Her Own Words column for the regional ovarian cancer newsletter (http://www.ovariancancerosw.org/). Since writing the summary was helpful for me, I thought it might also be helpful for readers of this blog to step back and look at the consolidated version of the arrival and survival with metastatic cancer. So here it goes…..

In my own words…..Marcy Westerling

At age 50, I was having a wonderful time and experiencing exciting work as a community organizer with a passion for justice. I had founded the Rural Organizing Project (ROP) in 1992.

Speaking against wars at home and abroad

My 50th year was all about transitions, the most exciting one having me take a leave from ROP as I accepted an Open Society Fellowship to advance my model of organizing at a national level. Then, in the spring of 2010 as I turned 51, my bliss was derailed by a Stage IV ovarian cancer diagnosis.

It started on my birthday with a vague feeling of heaviness. I wondered if the lovely cake family had made was proving too much for my system. The feeling didn’t lift and in subsequent days I mentioned a sense of someone sitting on my chest. Odd. I stayed active, but climbing slight hills on my bike required breathing tricks – it was like I was practicing being a woman in labor. A visit to the doctor led to a diagnosis of bronchitis, which didn’t make sense given how well I felt.

At the start of the appointment I mentioned that I also had intermittent stomach issues in recent months and I asked to talk about that too vs. waiting for the appointment I had made several months back to take place. They said, “No. Both your lungs and your stomach are big topics – you must choose one.” The appointment focused on my breathing. I had never before left a doctor’s office feeling silly.

In the next week my breathing became increasingly labored until I could no longer talk on the phone to make an appointment. That night I could barely climb the stairs to bed. I dreamt of an ambulance coming for me. The next morning my distressed sweetie found no argument as he drove me to urgent care.

Luckily, the doctor on duty was fantastic. Oxygen was given and x-rays were taken before he even completed my chart review. In a no drama way, he said I would need admittance to the hospital to figure out, “why the lung of a young, healthy, fit woman had collapsed.” He was so calm, so was I.

I texted friends as we commuted to the hospital thinking, “I’ll never again have such an exciting 15 minutes of medical fame.” I wanted everyone to know, “Marcy’s lung has collapsed!” It seemed cool.

The ER docs fast went from being comedic pals to sober workers as they narrowed the list of possible causes. They extracted two liters of amber fluid from my right chest, allowing immediate relief. I wouldn’t know until months later that that doctor told my friends in the hallway, “The situation looks grim.”

It would take a few exploratory surgeries and some false leads before I was officially informed on the side of the highway on April 22nd, 2010, I had some form of advanced metastasized cancer. For those who love drama, and the diagnosing of advanced cancer stories are always full of drama, details can be found in my short essay, The First Hello.

I have been in treatment since then. I often say, “I never went home after diagnosis.” Of course, I did but not really. My husband and I had laboriously and lovingly built the life we had wanted.

The happy couple 2009

It was based on the premise of staying alive and in good health. We lived in the woods with few neighbors. A half-acre pond was our front yard.

Our home at the pond

All around the pond were the orchards, animal pens and never ending year round beds for vegetables and flowers. We fed ourselves from what we harvested, sold eggs and imagined a small farm stand at the end of our driveway that would be the pension that neither of our cherished day jobs offered.

We loved our lives but with this diagnosis, I knew immediately any effort to stay alive would require building a new life – it would be in the city and it would include rigorous focus. My husband was more bereft than I at our loss. I had choice; he was along for the ride. Luckily, we live amid rich community and friends took over. They housed us in the city during frontline treatment, handling meals and facilitating decisions, allowing Mike and I to be dazed by the chaos of disease’s arrival.

By my last of six frontline chemotherapy treatments, my CA 125 was respectable and our move into our new city life was set. We started over. We built a life accepting the “new norm” and geared to bolstering my odds. They say that diagnosis via a collapsed lung means you have a ten % chance of surviving to two years.

I passed that marker in April of 2012 with little fanfare, as I was seven months into my first recurrence with my cancer far from tamed. An essay, Expiration Date, marked the occasion. That summer was especially hard as I experienced fairly extreme Doxil burns on my butt, hands and feet before being pulled off that chemo which had had minimal impact on my cancer. I coped by writing It’s A Dying Shame and some other essays. I started a support group across ages and diagnosis; it was for women wanting to talk about staring at mortality and also called It’s A Dying Shame.

I strive to embrace livingly dying, a phrase I credit to the late Christopher Hitchens even as I co-opt his language.This past November I did a reading at a coffee house of Livingly Dying essay excerpts and this September I travel to an Adirondacks retreat for a writer’s residency to decide where I might go next with the topic.

In April of 2013, twenty months after starting the qualification process, I transitioned from traditional treatment efforts to stabilize my cancer here in Oregon (OHSU) to a Phase One, Cohort Four immunology clinical trial at the University of Pennsylvania in Philadelphia. Quite a harrowing commute for medical care!

I had my official Phase One final treatment at the close of August. Odds are I will continue the commute for maintenance vaccines until I recur (and move to Phase Two) or run out of vaccine material in another year. But I await testing in late September and the resulting decisions. A great thing about treatment at Penn, though, is they don’t discard you from clinical trials if your disease progresses, the norm, they just adapt. I like that attitude. It matches what patients are forced to do.

Finding myself on the cutting edge of medical breakthroughs (or one more splendid failure), I decided to write a blog so that others seeking to prolong living with advanced cancer have easy access to my experience. It is called Livingly Dying – notes and essays on daily life with terminal cancer and if you like it, I hope you will spread the word to others. To date women from 45 countries have accessed the site.

Perhaps bartering my body for medical advances will grant me more time to find the sweet spots of living fully while terminally ill. While I stay saddened at how deeply interrupted my life was and how likely it is I will die younger than planned, I do marvel at how content Mike and I are with the life we rebuilt. We had a good life. We have a good life.

The happy couple 2012

Treatment Summary

Diagnosed: April 2010 Stage IV Ovarian Cancer – standard frontline therapy (Carbo/Taxol), optimally debulked, started parallel Phase Three clinical trial (BIBF 1120) in June 2010. Recurred: October 2011with multiple visible tumors in abdomen, started Gemzar/carbo. Carbo stopped in March 2012, Gemzar in April. CT Scans showed some tumors stabilizing while new tumors appeared. Started Doxil in May with Avistan added in June. Doxil stopped in August due to mixed CT scan and burns on hand, feet and butt. Surgery to remove easily available tumors set for early October – this was not technically a second debulking (because conventional wisdom of the time does not recommend them) but it did gather needed tumor for the Autologous OC-DC Vaccine Phase One trial I had been trying to enter for 12 months and gave me head start going back on chemo. Started low dose Taxol with Avistan in October 2012, which I stayed on until April 2013. Disease reduction with no new growth shown in January and May 2013 ct scans! My care transitioned to University of Pennsylvania with first treatment (Cytoxan, Avistan, Vaccines) of clinical trial June 5th and 6th 2013. My ca 125 has been at 7 since February 2013. (Unfortunately, I can have new cancer growing with a ca 125 of 13.)

Welcome to a space dedicated to the process of livingly dying – staring at imminent mortality and yet residing in the world of the living. More and more of us are finding the words terminally ill and chronic illness co-mingle. We are living longer and better despite a dire diagnosis/prognosis. But the path is not easy.

We bounce between denial, deep despair, and sheer optimism. All the while, many of us face treatment regimes that whittle us down and a current culture in the United States unfamiliar with sitting with death and dying. These writings will be of most value for:

a. people navigating the balance of living when told you are dying

b. people pursuing creative approaches, especially those stimulating our immune systems to fight back the diseases trampling us

c. people interested in witnessing one person living each day with terminal illness.

Livingly Dying Essays, Clinical Trial & Creative Approaches, and Medical Industrial Complex Woes make up the three categories on the lower right column of the front page allowing you easy access to content that most interests you. To receive new posts click the follow button in the upper right column. I share my journey to support collective efforts to live well while dying. I am feeling my way out loud. Thank you for joining me. Comments are always welcome, in fact, they cheer on the process. If you scroll below this welcome, you will find the running narrative with most current post on top.

My ovarian cancer recurrence in October of 2011 condemned me to the predictable but somber reality of life in treatment. My care team and I selected the Penn trial as the hail mary pass best suited for me surviving longer in this reality. Frankly, there wasn’t an extensive menu of choices. Many other women reached the same conclusion creating a line of hopefuls since winnowed down by the ravages of this disease and hefty qualifications. This week, 19 months after starting the process, I signed the entry paperwork with very little fanfare.

The final countdown to entry allowed me the first moments to switch from ‘must get in’ mode to ‘holy shit, what the fuck am I doing’ mode. It hasn’t made the trial any less compelling, just made my ability to survive the rigors of cross-country medical care a concern. Anyone who knows me knows that I am the ultimate homebody. Additionally, I crave open windows and being outside. Airplanes, airports and hospitals are the worst form of punishment.

Now I consign my high holy months of summer and fall to endless air travel interrupted with endless hours in the hospital. Palliative care patients are counseled to select quality of life since quantity will elude us. The quality/quantity tradeoff is complicated by hope – might I get a bit more time by sacrificing my quality? A more amusing tradeoff is the irony of my lifelong politics prioritizing local solutions (before it was cool) and now I select the least local medical care possible.

I completed my second trek to Philly this week. In the eleventh hour I cancelled months of detailed planning that had me scheduled to stay east between the two May appointments. I got seriously ill at the end of April, which humbled my pretensions of strength – I bought a new roundtrip ticket with bad seats and high prices, as I needed to come home.

My relationship with the travel gods has always been tenuous. It’s like they pull out their most mechanically flawed planes when I show up. They fix them, which is nice, but not before hours are added to the journey. The Houston leg of my late night trek home included several hours circling the city to burn up enough fuel to allow a safe landing and plane change. I crawled into bed at 5:30 am Philly time – a long day by any standards and my standards are not normal.

A month in and I am learning my Philly landscape – who gives reliable answers, what will happen each visit, how to navigate the city and where I sleep. It’s a pleasant city that I have walked enough to feel oriented. My volunteer host is well situated and generous. More importantly she has windows that open! A tiny terrace!!! I can walk the two miles to my treatments!!! These details mean a lot.

For much of my treatment I have opted to go solo. Getting medical care is my new job and people go to their jobs unaccompanied. Furthermore, I hope to extend this into a marathon versus a sprint and that means rationing how I complicate other people’s lives. But I am now realizing there is a big difference between going solo a few miles from your home with a rolodex of allies willing to be on call as needed. In Philly, I am a true solo act. There is no back up plan. Yet.

Mike can’t stand not going with me but I remind him of the importance of some stability and normality in our lives. He serves as the safe harbor I throw my mind to as I miss my life. I visualize him living for the both of us. He is the person who tends my every need when I am home but we still have enough balance that he stays my lover not just my caregiver. He attends all decision-making appointments but that’s it. I draw lines. They help me cope. But I missed him horribly this last trek.

Luckily, Philly is a fun city just $8 by bolt bus from NYC and other settings. I hope to explore having an east coast care team that can break up the monotony and challenges of this trial so far from home. (Any takers out there?)

The apheresis is next on May 22nd. It’s the dreaded procedure where 10 liters’ of my blood will be removed then returned minus dendritic cells. It’s hard on any body and mine was fragile before I started three years of treatment. My sister-in-law is driving down from upstate NY to share her competence and cheer. I leave for the hospital at 6 am, with all my gear (100% roll-able because I cant carry anything afterwards.) My plane departs at 8 pm that night returning me home at the alleged hour of 4:30 am Philly time. A long day. But then the hardest part is done (hopefully to be re-done only one more time in September.)

The first week of June I return to Philly to start actual treatment – chemo one day, vaccines the next then observation then HOME for 3 weeks! I will learn how to master this trial, the travel and ways to keep this a journey I chose – one that need not just challenge my quality of life as I barter for more time.

I close by sharing the invaluable words of Susan Gubar a colleague in living with incurable ovarian cancer. She blogs about her journey at the NYTimes capturing so many of the complicated emotions and body issues that I face right now as she talks about her life in a clinical trial. I say, ‘ditto.’

People with incurable cancer do sometimes receive good news, as I have. Why is it harder for me to share good news than bad news? During treatment, good news produces elating highs, but also anxious lows.

When I entered a clinical trial for a new cancer drug, the consent form stated that the medication would not provide a cure and could kill me. The pills’ effects on my ovarian cancer were to be measured by the CA-125 blood test, in which numbers above 35 indicate disease growth.

I started the trial last August with a CA-125 over 100. As the number fell in the autumn to 38, in the winter to 9, and in the spring to 5, my morale rose – tempered by occasional dips and drops.

My family and friends are ecstatic. So is my oncologist, who wrote in an e-mail: “You do not even know how exciting it is to see the results of this new drug. I do a lot of clinical studies and I see so many negative results, some of which are fatal. We do all that work to get one rare patient who gets benefit … very rewarding to see it happening to my friend!”

The last two words of this message touched me to the quick. After four years, Dr. Matei had entered my heart and (apparently) I hers. A great joy to make a new friend at my age and in my situation, especially a friend so admired.

Yet I worry that I will fail her. A number that descended in the past nine months can ascend in the next nine months. (Overwhelming odds are it eventually will.) Might sharing good news jinx it — turn it, in the blink of an eye, into bad news?

I know from the nurse administrator of the trial that the experimental drug is not benefiting women with breast cancer. My good news makes me distressed about their bad news. Also, I had overheard conversations in the hospital waiting room about other ovarian cancer patients dropping out because of deleterious side effects, some of which I experience.

Weak from months of dosing, I cannot stand on my feet to cook for more than 10 minutes at a time. At the supermarket, I ogle ready-made meals. Changing the sheets on the bed requires time-outs. Filling the bird feeder, hauling it out, bringing it back in at night (so the squirrels can’t raid it) takes too much fortitude. Bones ache that I did not know I had. My hair has thinned so drastically that Joanne at the salon clipped it close to the scalp, all the while lambasting comb-overs.

Diminishing the cancer seems to involve depleting me. Still, I have kept my resolve steady by focusing on the satisfaction of contributing (if only in a minuscule way) to medical research. I had also kept myself on an even keel by hunkering down for the worst.

Now, with the best possible results, I am a neophyte who does not want to be an ingrate. My trepidation at the lowering cancer marker reminds me of the angst recounted by many patients at the end of a round of successful chemotherapy. The gift of time starts to feel like a present spoiled by uncertainty about the future. With cancer, you can’t win for losing.

Yet today I would rather be a cheerful Tigger than a gloomy Eeyore. So to buoy myself I decide to use the chicken stock defrosting in the fridge, its fat congealed on the top, to make matzo ball soup for my visiting daughter and son-in-law.

After I toss most of the fat, saving a tablespoon, I start whipping up the egg whites. But one of the rotary beaters of the electric mixer refuses to stay in its socket; it keeps falling out, no matter how I swivel it. I am here to testify that the gizmo works with only one beater. That, too, feels revitalizing, even though my low numbers and high spirits may have started to change on the day you read these words.

Tonight there will be homemade soup. Tomorrow I’ll put out the bird feeder and leave it out, despite the squirrels.

Technically, this last year was a tough year but, in fact, a year ago I was six months into failing chemo after chemo to handle my first recurrence. My options were not looking great as I penned an essay Expiration Date that I cut and paste below. (Please feel welcome to share.)

Diagnosed with cancer after a collapsed lung, my statistical odds were a 10% chance of living beyond two years.

This past year we fought for and got surgery to remove my largest tumors, found a chemo regime that worked and we keep fingers crossed that my cancer will stay stable until I sign paperwork for entry into the clinical trial May 8th. Today I enter my fourth year with this cancer. Most of the time I am in treatment and always awaiting new blood work to reveal which direction the cancer is moving. There are few opportunities to feel confident.

Not every day is a great day but almost every day has great moments. Just like for many of you, I suspect.

They say tomorrow kicks off a string of sunny days – what more could I want. Well, stable blood test results would be very, very nice as well. xoxo

Expiration Date: an essay on Livingly Dying

I was once known for buying deals on almost-expired meat. However, I didn’t limit myself to expired meat but that behavior earned me top notoriety in my friendship circle. Taking expiration dates too seriously was never my thing. Expired cold meds even seemed to offer an occasional high – who knew?!

These days I am grateful for my common sense attitude toward dates as I stare down the ultimate expiration date – my own. One month into my 51st year I was given a 10% chance of being alive in two years.

People say funny things as they attempt to comfort the terminally ill while managing their own fears. One common statement reassures that, “We are all terminally ill. You just know it”. “Harrumph,” I think. I do know. I more than know it as my weary veins dodge yet another dose of toxic poison infused with the knowledge that it will bring me to my knees with exhaustion, nausea, brain fog. Slight consolation is the hope it will keep me alive awhile longer.

When first diagnosed on April 22, 2010 the doctors made every effort to be factual but tactical. Incurable and metastasized were mentioned, but not terminal, not palliative care. Yet every appointment from then on seemed to include the statement, “You will die from this disease.” It was like a boot camp mantra – getting me used to my new normal. I was in shock but I could still rebel at that edict. “How dare they,” I fumed. But then one day I realized the only way to avoid dying of this disease was to have some other tragedy end my life. What kind of victory would that be? Would my oncology team really be impressed that I managed to get run over just to avoid suffocation by cancer? I finally accepted I would not die of old age, but from ovarian cancer.

I have learned a lot about advanced ovarian cancer. It is recurrent, relentless and fast to adapt to any chemotherapy sent its way. Ovarian cancer is not a particularly painful cancer. I like to note, “my people die looking good.” We tend to move in and out of treatment, giving us some much valued recovery time, which is further boosted by steroids when in treatment. It seems wrong to call our form of cancer a wasting disease. One day the doctor will simply inform me the cancer has outwitted all the chemo types available, and treatment will end. I will then enter hospice and die soon thereafter – looking pretty much like I always have albeit possibly bald and ten pounds heavier courtesy of those steroids. I claim the ovarian cancer sisterhood as my people now, because they teach me how to live and die by example. It is a tough group of women constantly being whittled down with funerals and then expanded as the newly diagnosed walk in.

I stand on a particular type of death row. I have been sentenced, but some vague appeal process offers me the possibility of being an outlier – one of the few who survive for over a decade despite the dire odds. No one knows why. Unlike an actual death row inmate who is confined in every aspect of living, I have freedom of movement, tethered mainly by treatment timelines, financial realities and other choices. What I am denied is the freedom to assume I will be alive three months hence. What started as an insurmountable burden I am learning to accommodate. I move from solitary confinement, to a shared cell and then to a mere ankle bracelet with frequent calls from my parole officer. It is inconvenient but not intolerable.

For me, I cannot live without hope. When I think of my death as truly imminent I feel a grief that I now see as pointless – I just don’t have the time for such sadness. I choose to save those tears for when I am told it is time to contact hospice and then I will move into that final phase of acceptance. My current mandate is to live with the shadow of death seated comfortably on one shoulder – I rarely forget but I often dismiss my new companion. Parameters are drawn.

Prioritizing hope does not require me to feel optimistic. I am especially clear eyed right now as I endure my first recurrence too soon for it to be a positive indicator. Worse yet, my cancer has only grown after eight months of renewed treatment on multiple chemos. (Please note: one year later, April of 2013, I am closing out a new chemo regimen that seems to have moved me towards remission as well as entry into a cutting edge clinical trial.)

I have made a certain peace with leaving this world, a comfort experienced only after considering what I might do, where I might be, what I might become after I die. What’s the harm in daydreaming my possible death future? The worst that can happen is that I am wrong. I live in a culture that offers few possibilities around what dying means to the person who has died – it is either viewed as THE END (with many finding spiritual solace in turning into humus for the ages), or viewed in mythic versions of heaven and hell. Neither option works for me.

Weeks after my diagnosis I sat in the Spring sunshine by a burbling creek at our homestead. My sweetie was doing the chores that I was barred from doing post surgery. This was a favorite resting spot of mine. The chickens made their comforting sounds in their enclosure to my right while the more rambunctious ducks blurted out their loud, harsh and comical sounds in the pasture to the left. The garden emerged behind me. I was surrounded by so much that I loved. The warmth of the sun reached every nook of my body. The tears I cried were happy ones. Why could this not be my heaven? Why couldn’t I decide that here I would reside, barred from engagement with my former world, but observing it more happily than not? I make the choice to imagine my next world much as Peter Pan declared, “To die will be an awfully big adventure,” even if he imagines his death more boisterously than I do mine.

I have heard of stoic, terminally ill people who chose not to burden others with their diagnosis. I have yet to meet these people. Others allegedly fear being defined by their illness. My response to the diagnosis of terminal cancer was to count down until the first remission allowed me to get a large tattoo on my wrist declaring me a Cancer Warrior with the script positioned for any newcomer to read. Every bag I carry sports a button stating, “Cancer Sucks”. I dare the world to ignore my diagnosis just as I defy any attempt to limit me to my diagnosis. I bike everywhere, slowly to accommodate the damaged body, wishing for a banner across my back to allow those swiftly passing me to know that I am biking despite cancer in my chest, abdomen and pelvis. What a small way to proclaim what it means to live fully with your expiration date. How comforting it might be to the newly diagnosed to have such models.

Two years in and my closest friends increasingly challenge what they see as my negative self-talk. I am in palliative care. I have been in palliative care from the beginning. I missed the few curves that could have portended improved outcomes – longer survivability. All success is measured by longer survivability, especially by me. I recurred too fast. The cancer is now ten nodules versus a few which would be possible to grab via surgery. Yes, I think palliative. I hate it but I would hate more missing this closing phase of life by pretending things were different.

Deep inside I continue to work on a story line that allows me to live – I fall asleep to the effort, I awake to the possibility. I pray for a miracle knowing that, really, only a miracle can save me now. The deepest part of me still believes I will survive despite my intellectual clarity that advanced ovarian cancer is almost always terminal. I just can’t imagine saying goodbye so young. And then I fret; maybe I did talk myself into recurring so fast.

I get my affairs in order. I avoid paperwork at this phase of life and focus instead on my closure — painting rocks for memorial service party favors to be remembered by, quilting for loved ones, making time for conversations I would rather not have. I have written up a burial plan.

I live on death row in a lovely neighborhood, in a lovely house surrounded by perks that don’t eliminate the sadness of departure. I hold my pink slip from this world. My life stays filled with joy and meaning as well as a mantle of sadness – the former only enriched by the latter. Years prior I wondered, as do many, would I rather die unexpectedly – poof, be gone? I suspect not. I like to orchestrate. I definitely intend to script this phase of life and be thankful for the opportunity.

Some days resentments push forward. I know how much fun retirement would have been with all my friends. Will I really have to miss the magnificence of the maturing front yard that I’m planting this Spring? Will someone else match my devotion to what I leave behind of my life?

My expiration date has passed. I live. Today is another day on death row. I embrace livingly dying, in the words of the late Christopher Hitchens, and I am grateful for this luck.

For weeks and longer I have tried to draft an update that serves the purpose of sharing information. I have started many. They all languish for tone. They sound woeful and yet I write during a positive moment – I might be getting a second remission. Another remission was not very likely given this last 17 months of treatment failures. Remission does sound great. It is also hard to see it as more than a short break between treatment. My body and I are very, very tired of constant treatment so a break is not to be sneered at. My body and I are also tired of the constant suspense. Between bi-monthly blood tests and the ongoing lurching steps towards the UPenn trial, what happens next hides behind curtains that I do not get to chose.

I should be shouting out good news but really I am calculating the best way to get through the day. What are the top three side effects that I must fixate on tempering? I won’t list the options.

My orientation is towards planning, micro-planning perhaps. I have adapted to many aspects of my new terrain, this staring at mortality, but I find living with imminent death somewhere between the biggest uncertainty and a reality far too certain. It sucks for planning around. So then I fixate on the established treatment schedule, trivializing the point of treatment by feeling entitled to dates being met when in fact disease stability is the only real goal (and then extending and extending that stability). Of course my treatment plan changes to match my needs. But I hate how it ruins my carefully re-calculated plans again!

Friends, ever-loyal-beyond-belief friends, take over the planning details so that I have less reason to obsess. I focus on adapting to the new truths. I can’t tell you how many times my graduation date from this chemo regimen has changed. Most recently, after a tough week of accumulating side effects it seems that I might not go additional ‘extra’ rounds of this regimen but that wont be determined until March 28th, the same date as I am schedule for another chemo round – whatever. I will arrive packed for the decision we make.

Most of the time I just wonder as I live a life of such low bars. My days are a sequence of very, very small triumphs. And it is so many months now of trying to fashion this into a life.

I mange to get to weekly chemo, fast for 36 hours around each infusion, make it to my acupuncture appointments twice per week, exercise daily and not much more. I have idle hours. I sit and play at the iPad, read and think of the next tiny task I will attempt – maybe it’s sweep one floor or gather laundry. It is never as complicated as ‘do laundry’ because that is now a concept that needs to get broken in to component parts often over days.

I have mentioned my determination that 2013 would be the year I focused on living and returning to my old passions. And I have. It has exhausted me. It also derailed the writing projects I started. This girl-living-on- chemo seems only able to mange so much. Mike and I did attend the first national Anti-Fracking Summit in Texas in early March. The passion and determination in the room were fantastic as was our session on rural organizing. I continue to advise some of these new contacts as they work on the ground in rural america. Texas was great and yet how hard for me. I got sick and it highlighted the reality of being disabled in a fast moving world. One terminal friend inquired, “Is it too much, these attempts at being part of your old life?” Maybe, and it makes me sad.

I limp around an intersection between malaise and treatment-induced-exhaustion. It is a quiet place, fraught with intentions not to be realized any time soon. My forays just prove the point. But despite my disappointments at how hard a front line role in organizing stays for me restricted to cancerland, behind the scenes I continue to advise and be valued and I am grateful for this role.

The UPenn update is despite their ongoing delays, Holly and I are showing up on April 4th for a pre-screening since the actually screening can’t happen until their vaccine making building setup is expanded. Hopefully, my real screening will happen May 8th with the final vaccine making step taking place on May 22nd when they pull out and return my white blood cells to combine with the rest of the materials they have been prepping from my tumor removed back in October 2012. If those dates happen, I would receive the vaccine three weeks later – a date carefully calibrated to be within a window as well as on a day when only one other woman in the the trial gets her vaccine, since the FDA won’t allow more then two women to be treated a day during this highly experimental phase. Each injection needs to be timed for when a radiologist can use equipment to guide the vaccine to the selected groin lymph node.

This is not how I wanted to spend my summer, in planes travelling to and fro. Marcy the planner, had mapped this out quite well to be a winter activity. My entire adult life had been about building the life I wanted. And I did. This cancer phase is about enduring little control and still figuring out how to thrive. (Grrrrr….) And remember up until my formal screening, I can be disqualified for a roster of possibilities.

And ergo the party. What better time for a party then as a counterweight to my 3rd cancerversary – a time of reflection on the losses, new reality and being alive still. Spring is swelling around us. The passage into this new season assures we are all still here – living and building the best life we can. It is good, wonderful quite often, and yes, hard for all of us as well. A party is a chance to pause with the positive. Attending a dance party doesn’t mean YOU need to dance but that you will be in a room pulsing with the beats of life and a live dj that knows how to get your toes tapping from whatever corner you find yourself. Good food, good people. Me celebrating a birthday that, alas, is a triumph to realize. Yes, a party is a good thing. I very much hope to see you there.

Come Join Us!

Marcy’s (Birthday) Dance Party – live DJ

Saturday, March 30th, 2013

7:30-10:30 pm

“Joy is the simplest form of gratitude.” ~ Karl Barth

Join together in gratitude for Marcy’s 54th birthday and the community that sustains us all.

It’s a Dying ShameA shout out to the less honored side of facing death – when more public grace and stoicism are shoved aside and the darker emotions take hold. What do we hide, and why? What do we lose? What do I lose if I hide?

I heard a story about the Buddha being approached for counsel on the best way to handle news of one’s own approaching death. Buddha, apparently, began to flail around in deep, loud, uncomfortable hysteria for several long minutes. Observers had no idea what was happening. Just as suddenly Buddha sat back up, done with the outburst, and said, “There is no right way to die.”

This story gives me solace.

People love to say to the terminally ill, “You are so stoic, so graceful. I could never handle this so well.” Perhaps not, but the greater truth is you may have no idea how well or badly we, the dying, do handle it.

People I am in casual contact with believe I comport myself well. Even though I lack the energy for hysteria or the time for despair, I certainly feel both. When in treatment with chemotherapy I have the solidity of bodily discomfort to remind me there is an effort underway to keep me alive, and it might just work – in other words, I have HOPE. And with hope my daily life can be oh-so-fine.

When I am not in treatment but need treatment, I sink, hour-by-hour, deeper into a very dark well. It’s the well I found myself in when diagnosed two-and-a-half years ago with metastasized cancer. There were times when I could see some glimpse of sky. But when the sky was obscured, the basic activity of breathing took all my energy.

A message arriving from the larger world – a photo, a mundane tidbit, cookies – allows me to find some sky, whether for thirty seconds or an entire day. That is the power of a tether to the world I fear leaving. That is the power of small acts of reaching out – not fearing to say the right thing, but instead opting to say something.

Since August 2011, when the rising numbers of my blood tests could only indicate recurrence, I have had episodes of complete darkness. The tests and the waiting that surrounds them wrings me out like a shirt hand rinsed more times than its weave can handle. I get my numbers monthly, interspersed with October, January, April and then August cat scans – all of which show my cancer on the move despite switching treatment approaches several times. I am running out of options. The weave on that beleaguered shirt seems unable to withstand another wash. You retire such a beloved shirt. But being retired from treatments only leads me to hospice. These are high-stake test results. My mother urges me to relax. She is old and can’t bear to watch another of her children die. She means well, but relax? — how cruel an intimation. Most philosophers see the ultimate struggle of life as contending with death. I know I will be relaxed, as are most diseased people when death arrives. I am not sure, though, I can stay both human and relaxed while awaiting these announcements of death’s relative positioning – the tests are my only way to check in on its approximate arrival.

Some patients get good news and celebrate. That’s my hope. But I have been traveling an uncharted road, with breath held while waiting for such news. Now fifteen months of lousy test results leave me worn out.

At such loaded moments I need support from contained people who follow my lead – who understand that one minute I might seek updates about weather and children, the next instant I switch to exchanges about my death, my memorial, my hopes, my fears, then back to the best new show on television.

Following each appearance of further bad news, always worse then I anticipated (despite my pre-cancer self always assuming the worst!) is a break in my treatment plan. These are dark, dark periods where there is no sign of any sky. I think of childhood shows like Flipper and Lassie and wonder, “How can they ever rescue me when I am so hidden?” I know Lassie can find me when I see sky, but here in this totally dark zone it must be asking too much. My fate feels sealed. I am doomed. The end is imminent. And I am not ready. There is no courageous acceptance here.

From the start of my cancer journey, I have been held in amazing community. Meals coordinated via a Helping Hands website. A team of friends research best clinical trials. A few others seem to track every infusion date, magically checking-in, knowing that infusions are rarely routine. They are ready to drop their busy schedules to accompany me to an appointment. It is assumed that my sweetie can only do so much.

This community is more than a circle of love. It is a scientific advantage in staying alive. Study after study shows that those patients who are fully engaged in support circles as well as in their health care decisions, survive longer and better.

When the darkest moments hit, I am least able to reach out, and thus links to my support system fail. Out-of-state vacations and busy work schedules steal away those who have been so solidly on the front lines. My stalwart friends, working as a team might be maxed out with bureaucratic efforts to save me. It’s a much needed to-do list, but not a scaffold down to my dark, hidden cave somewhere that I can barely identify. I try to crawl out when my beloved returns, oh-so-tired from another workday moving stones and earth. But they are not the stones and earth that hold me entrapped.

He never complains as I excerpt highlights from my day underground. I share a cute, endearing vignette to prove that really, I can handle all of this; it is safe for him to leave for another day of work. But I know he knows the layers of my pain and carries what he can off with him. Perhaps he truly is moving some of the weight that I feel obscuring me as he wheelbarrows his way through another day.

Does much of this sound stoic, courageous or full of grace? It should not. It is not. It is dirty, sad, barely witnessed pain. And so I ask you, dear reader, be less generous with your accolades. Be suspicious of my silences and smiles. Learn that protracted death asks more from you then being impressed. Dare to look behind the curtain. Dare to assume that I am not stoic, courageous or full of grace between treatment plans.

Allowing more dimensions to emerge makes walking towards death seem more doable. When we keep our conversations polite and are afraid to put down our upbeat masks, it distances, simplifies and cleans up a terrifying stage of life. It forces denial. I cannot think of any moments in life better suited for full honesty than birth and death. The primal pain of birth refuses to mask a dirty process. Death allows more options.

Recently I convened a group of terminally ill women in my living room under the name It’s a Dying Shame. The recruitment invitations mixed humor with frank language and created a little stir. Medical privacy laws make it hard for patients to find other patients so we recruited providers to spread the word. One supportive provider wondered aloud why I would use the phrase ‘terminally ill’. Really? Why?

I have been bludgeoned with that phrase since diagnosis. Maybe I lie. Maybe it is more accurate to say that no one has used that phrase and instead they repeat ‘you will die of this disease’ over and over. Excuse me if I translate what that means. This provider went on to say, “People want to live with hope.” Again I felt sucker punched and could only reply, “But I live with enormous hope. I am determined to live another twenty years. In one hand I hold the scientific reality that my odds of surviving another few years are dismal. In the other hand sit my just as clear-eyed hopes.”

When the room full of women gathered, the shared motivation was to talk our truth. None of us had such space despite all of us having attended other more formal support groups. None of us wanted to be labeled terminally ill but all of us were, even if etiquette requires more gentle language. The current rules of polite company make the journey towards death more isolating. As one woman noted, “It is like we are standing in a different room.” Our truth, though, was expressed with humor, not tears. I hadn’t laughed this much all month.

We are asked to hide the emotional side, even when humorous, to protect a culture that is not skilled at facing death. We lose the chance to become a culture that sits with death, sadly but comfortably, just as we accept that for every baby born, a new dead body is promised. A dead, cooling body need not be scary when we are given such awareness. Instead, we are offered zombies.

My first nightmare happened as a six-year-old after watching an episode of Get Smart, a weekly comedy of a goofy secret service agent. I loved the show but in this episode there was an overwhelmingly crowded room full of mannequins where the agent got trapped. They were over, under and around him at all angles. I was not too young to catch some whiff of the mannequins as metaphors for death. My discomfort with the agent’s situation extended into dreams and entrenched my long-term fear of bodies.

At my grandmother’s open-casket wake I provided hysterics when coached to kiss the body. When my 18-year-old brother died in a car accident, I accompanied my mother to identify the body. He was wheeled in behind a viewing window. Hours later we visited him in the funeral home. I removed the horrifying toe tag wired to him. He was nude. I so hated the minimal sheet assigned to offer warmth, and the thought of him being left alone that night was unbearable. I have disconnected snapshot memories of being at the crematorium and hearing the loud whoosh as his still nude body was fed to the flames. I fled. I was on a plane home before his body was reduced to fragments of bone. I doubt any cultural realities could have made such a tragic death more bearable. Tragic will always be tragic. But would I be less haunted if I could have spent the night with him, washed and dressed him as I imagine he would have chosen, and experienced more than his cold, violated, vulnerable body on slab after slab? I yearned to hold this body I had embraced so much in life.

Recently I had a front row seat in how fitting it is to sit with the body of a dead person. My brother-in-law was diagnosed with ALS nine months before it killed him. We are a small family on all sides. Smaller still by geography. This second terminal diagnosis so quick on the heels of mine seemed rudely timed. But disease is not about respect. His fast entry into hospice and faster yet progression towards death surprised us all.

Few folks made it in time for his final breath but his poet wife narrated it with beautiful detail allowing us all to feel as if we were almost there. We arrived within the hour. The living room was crowded, quiet, yet content. He lay peacefully in his bedroom. Candles were everywhere, as was extra seating; this was an enticing place to be. There were no rules for how long you sat, how often you walked the few dozen paces from the living room to the bedroom, what rituals we each selected to meet our own needs. It was so calm, so cushioned. Further visitors were diverted and gradually the group winnowed down to those most impacted. A day of dying made so organic with so few flaws in the scripting. The twenty-year-old daughter was supported in making the few decisions of the day. How and when should the body leave the house? Death had not been invited but was accepted, anticipated and lived fully.

Fred was not particularly brave about his death. Dementia had obfuscated the diagnosis and whittled down his smart intellect. Social niceties were deeply dulled by inroads of the disease in his brain. He startled all of us those first few months by blurting out “I am scared”, received by a deep silence as we tried to manage our response. How wonderful for me to have someone saying the obvious.

He was courageous, graceful and stoic in life and death, but he was also very real. We are all scared. Voicing our fears may or may not make us less scared but surely it makes the experience more bite sized and human. It opens up the door for actual support. I believe Fred’s fear shrunk just a bit each time he stated it.

Perhaps what I most hate about the predictable adjectives assigned to the dying is how they belittle who I was before being diagnosed with terminal cancer. Having been a shy child, I was determined to be a courageous adult. I was. Fierce, brave, bold – those are the adjectives I worked so hard to own. I am proud that my life has exemplified those words to many. I am brave for how I have lived my life. I am not brave because of the poor luck that finds me with terminal cancer at age fifty.

Our society oddly conflates poor luck with bravery. Think September 11th. Rescuers were brave. Those randomly stuck in the upper floors of the twin towers, had very, very bad luck. They may also have been quite brave but being there didn’t make that true. Bravery should imply some choice. I am not sure I would have made the courageous choice to be a fireman walking up those stairs.

Members of the terminally ill club to which I belong — those that acknowledge their status — are a pretty raucous bunch. We laugh a lot. We are irreverent. It is a sad but genuine humor, this humor of the brave who cope by refusing to be silenced with politeness.

My momentary good news is that Lassie is dragging me towards air, towards a bit of sky that marks a new treatment plan. With the return of the physical challenges of active treatment I re-find my hope. Perhaps I can use this three-month treatment cycle to better plan for enduring future bad test results. The cycle is predictable. I will find myself back in suspended animation in my cave where there is so little oxygen to sustain me. I need a better plan because during this current stretch I have barely been able to endure my own psychological stench. But this is what prolonged dying looks like when the messy moments are not hidden from view or glossed over. To camouflage such realities is an injustice to understanding human life, mine included. What would the Buddha say to that?

Despite my intent to write a caringbridge update in December then January, it has stayed a task I avoided as I wondered both “what to say? and “do I have to?” Thoughts I tend to have when I actually have few thoughts. But I know that many of you wonder if my bags are packed for Philadelphia. They are not quite yet.

2012 was a tough year in my treatment experience, largely because I never believed my treatments could be so unsuccessful. (I can state that “I am terminally ill with a hard to tame disease”, but that does not mean that I really accept it myself.) I went from one unsuccessful treatment approach to another as some tumors responded but new tumors grew. By the summer I was on a chemo that actually burned my butt, feet and hands – very surreal. You accept it in the moment because it is the reality but when you look back it’s like, “Wow. Really?”

My current treatment is considered easy to tolerate and it is. I expected to ‘graduate’ in December and was surprised then demoralized when the retrospectively obvious was stated for the first time – I should stay on this chemo for the complete 6-8 cycles (eg months) if it might be working.

This delays my start at UPenn. And the easy to tolerate chemo routine becomes less easy to tolerate as the effects are cumulative. I find it harder to breathe when active, always unnerving. (The doctor says my lungs are not filling w.fluid – very good news.) Breathing hard after walking is just another side effect of treatment. The other morning when I biked to chemo, parked and got on the elevator with a security guard, I could see his concern at my heaving breathes. I hate that. It took almost 10 minutes to settle down so that I could talk. The same thing happened yesterday when I walked to a store. All Fall I tracked my hair loss to see if my thinning process would, in fact, lead to baldness. I felt triumphant as I still looked ‘normal’ in December but can I stall the effects of my hair loss for an entire 6 months? (You may wonder why would I even care. Well, I care.) Then there is the start of neuropathy in the fingers and toes.

I know the escalating breathlessness will disappear post chemo but neuropathy tends to stay a permanent companion. I accept these side effects of trying to stay alive, each of us has a similar list of barriers and struggles, but in the weeks leading up to a scan (vs the great cancer vacations of months like October and November) I find myself less patient with the equation. “All this and I’ll probably still fail my ct scan!” Such thinking happens. For those of you positive-thinking-all-the-time folks, please know that I have assumed the best when having most of my other ct scans and gotten walloped with bad news, so honestly, I dont think I am growing my tumors by wondering just what all my chemo distress is accomplishing. I have even added in two days fasting before and after each weekly infusion since early research shows it can reduce side effects and may amplify the chemo focus on the cancer cells – I am working hard to tamp down my tumors.

The delay frustrated me. It continues to frustrate me because I have no desire to spend my summer months traveling back and forth to Philly. This timeline should have been fairly obvious at the outset but communication and leadership is all the more challenging when you change providers and have a long distance trial you are trying to accommodate. Mainly I stay frustrated that so much of my life is about staying alive and the suspended state it requires. I vowed to find my footing in 2013, reclaim my life but building a life beyond the constants of daily health care regimes is just not that easy for me. I have only so much energy. I have only so much vision.

I have deemed myself in a malaise and thus exempted from much more then putting one foot in front of the other this December and January. But you wonder and ask what is going on with UPenn, which I appreciate. I will be scanned in late January with results on the last day of the month. Because my blood work is not an indicator of what is going on inside me, this will be the first real check-in since early August. If it shows no new tumor growth, I will stay on the taxol/avistan combo through mid-March or possibly early May. At that point, if declared by my doctor to have had an ‘optimal response’, I will then transition to the UPenn trial. UPenn requires seven visits to Philadelphia in a tight numerical sequence. (And forget about that corporate jets transportation.) I am still not ‘in’ the trial until I physically go there, get approved and sign the paperwork. Until then my slot can go to the next candidate but as I have worked for 18 months to qualify so has every other candidate faced these barriers. While it has been tempting at times to give up on this trial, my heavily treated body is no longer eligible for most trials. And UPenn stays a dynamic place for cancer break-throughs.

In the meantime, I stay distracted with the endless paperwork of being alive. And I scheme (thus far unsuccessfully) about a winter trip to somewhere warm and sunny. Or just warm.

Malaise – it’s a lovely word that hits the spot even when you are not quite sure what it means. It is “a general feeling of discomfort, illness or uneasiness whose exact cause is difficult to identify.” Okay, i probably dont qualify for the latter part of the description but I still claim the malaise of December and January and do not see it as a negative thing. I had lovely holidays. I enter 2013 with hope. And that sense of malaise that sits with me like my knitting, well, I think it is just fine for now.

Thanks you as always for the many kindnesses that keep this journey just fine for Mike and me.

Journey With Cancer – The First Hello
Written 45 days after diagnosis (June 2010) and my first formal communication to friends and supporters. Adapted for broader readership in 2012.

April 20th, 2010 at 6 pm, I park on the side of an Oregon highway waiting for a return call from a doctor. It is gray. I learn that I have “advanced cancer” in a brief call. 36 hours later that diagnosis is refined to Stage IV Ovarian Cancer. There is no Stage V.

In the diagnostic roller coaster leading up to this call I have bartered endlessly, assuring myself of how accepting I could be of any diagnosis but cancer. Congestive heart failure, sure. Rheumatoid arthritis, easy. A fungal infection with a 25% risk of death, absolutely. I share my bargaining chits during various emergency consults where anonymous healers attempt to figure out why the lung of a healthy fit woman has collapsed. My negotiations fail to amuse a single doctor.

April 22, 2010: it is Earth Day and two days after that initial call. It’s also day three of the oil gusher in the Gulf; it’s the day my dearly departed little brother would have turned 43; and it is the day I am handed my formal death sentence. Any show of control collapses. I have drawn the shortest straw in my diagnostic bundle. My life as I had constructed it comes to a close. Crash, boom! Any illusion of free will has been replaced by the will to live.

It is 45 days later now. I have been coming to terms with my short straw. I see my job as using acceptance to construct a new life, however brief. In recent weeks I try on many faces including wise, gracious, funny and sad but I am never as genuinely sad as when I walk out of my Ovarian Cancer Support Group meetings. It is then I feel in the deepest pit of my stomach the very imminent reality of my death. God damn.

Feeling my death is so raw, unlike anything I have felt before. Thinking about my death stays a mere exercise of intellect – it is a removed and obvious truth that I can surely handle. Feeling death is so incredibly sloppy. Slow tears trickle out as I move towards a very different type of acceptance and grief. There is nothing for me to give permission to in this experience. Death is coming for me and it could be coming fast. In allowing myself to feel the reality of death, my stomach lurches endlessly, radiating out in cold, sharp spasms. It is as though I’m enduring a constant replay of the dream-fall when sleeping – the one where the stomach lurches and you are shocked awake at just the point you realize you will hit bottom. But this is real and there is no dream to awaken from. This is a Stage IV Ovarian Cancer diagnosis when you have suspended thinking and grasped Truth.

I am re-born in this free fall. I am re-born to the council of my medical team – “You must start living as if the next three months are your last. And when you are still alive at the close, make a new three month plan.” This is living with Stage IV Ovarian Cancer. It is a sneaky diagnosis that will allow me to look and feel great as the cancer makes its own decisions on longevity. It will decide which three months are my last. We will all find out together as the final three months dawn.

I believe I can do this. I will learn to live in three-month intervals. I will hope and dream and build in smaller allocations of time. But am I going to do this in my heart or in my head? In my head it is a mere storyline I can make interesting, wise and abstract. In my heart it is a constant tremor radiating from my stomach as I fall to my death several times a day or maybe several times an hour. I am offered drugs to derail the anxiety as I fall, but what do I lose if I take the edge off? And, if I don’t take the edge off, how will I get anything done or feel any joy or feel anything other than desperation?

45 days in to my new reality and I am bald. My signature long blond hair is gone. Catching a glance in a mirror is jarring, demoralizing. Why this overt humiliation now?

My house is also sick. It has been diagnosed with mold and so I am barred from entering because mold could kill me – an irony I try not to dwell on. My living quarters are reduced to a single room generously loaned by dear friends as they shower me with love, laughter and attention. My middle class American life has been whittled down to what will fit in a few bins. The bins taunt me with lessons of detachment. Must everything now be about preparing me to leave this world?

I have started to vanish. I can sense colleagues and friends, overwhelmed with the demands of their own lives, cutting me out of the day-to-day flow of work-based communication, so as “not to derail me from healing”. I crave updates about everything that formerly was my life. It’s been a mere 45 days and my erasure from the news of the day is underway. Does no one else see the irony of not distracting me from getting well? So many ironies at Stage IV.

There is so much more to acknowledge, like the bundles of love sent my way through cards, notes in the virtual guestbook, food and good reading material. As I free fall, kindness envelops me and cushions such a scary moment with light and possibilities. As we all struggle to find our best place in this very real drama please don’t fear making mistakes. Cancer is a mistake. Reaching out to me will never be a mistake.

I am lonely and scared. I am like a little Who from Horton Hears a Who — hanging on a thistle screaming out, “I am here, I am here, I am here.” Please hear me, love me and help me live this last phase of life as completely as possible. Just don’t rush my disappearance. Please.

Marcy Westerling
Oregon • June 10, 2010

I’m a kickass community organizer dedicated to the notion that small town Americana is filled with justice seeking souls that deserve support as well as have the power to bridge the false cultural divides of our times. – Marcy Westerling